Kate’s Story
My journey began with a wheeze, as I was born asthmatic. I had chronic asthma as a child growing up with many asthma attacks and chest infections. I had a respiratory Consultant and Physio sessions regularly. I was always ill though, any slight cough or cold my siblings had I had it worse and invariably it turned to chest infections. I remember suffering an asthma attack on the way home from school when I was 9, we had moved and it was quite a walk for me, a man I didn’t know found me and carried me home to my mum on his shoulders, it turned out he was the postman! I would be taken home from school by a teacher in the middle of the day and left at the front door, my mum would be at work so the key was on a string through the letterbox! How times have changed. I had all the usual childhood diseases, always worse than anyone and always with either an asthma attack or chest infection. It really affected my schooling, and although I was often ill I belonged to every team at school, Hockey, Netball, Tennis and Athletics.
In 1992 (I was 32) I had my aortic valve replaced as I was born with a bicuspid valve which was discovered 2 years previously when I was in hospital for minor surgery. It had been gradually deteriorating, affecting my breathing and energy. I was referred to Cardiothoracic Consultant who called a specialist from London to check me over who within 5 minutes of meeting me told him I ‘just had asthma’! I insisted it wasn’t ‘just asthma’ and was told if I wanted to ‘waste’ her time I could go up to London for an Angiogram! I did and immediately after it I was surrounded by her colleagues all agreeing that I did need surgery. After that surgery I felt really well, a new woman and recovery was swift. I still had asthma and my life continued as normal except I had more energy to play with the children and do the usual things like housework and continue my job as a childminder.
I had a few good years lung and heart health and lived my normal life. I had so much more energy and was able to get a full time job managing a Herb farm which included Tea Rooms and 2 shops which I loved. Sadly I was only there for 18 months as my body let me down again with a bout of Glandular Fever which then was followed by more Asthma, chest infections and viral illness. Then I started having bad winters with lots of breathlessness and chest infections from October to February. I got in to see my consultant on a more regular basis but for all his tests and appointments all he could come up with was that I was Hyperventilating!? The best thing he did for me was prescribing Seretide which has kept my asthma symptoms under control ever since, my wonder drug.
In 2004 I was again facing Heart surgery as my previous valve had calcified and again the breathless and exhaustion side effects were showing themselves. I wasn’t worried about this surgery as I had sailed through the first and the recovery. However, this time when I woke up on the ventilator (you are on this for the first 24 hours) I couldn’t breathe. (It was a traumatic time and eventually left me with PTSD). My lungs were badly affected and all I could think about was getting out of hospital as fast as possible. I had a Ventolin inhaler with me and used it constantly over the next 3 days until they said I could go home I was so desperate to leave.
On returning home my GP visited and my breathing was so bad he put me on oxygen for a couple of weeks. I was still short of breath, my friends came to walk with me as I recovered from the surgery, but I never recovered to normal. Now I couldn’t walk so far or so fast and even a small slope defeated me. I was totally exhausted all the time. Nothing like the recovery of my previous surgery. I did the rounds of what’s wrong, again seeing Heart and Lung Consultants. The heart tests came back ok but my Cardio Consultant mentioned possible Bronchiectasis. This was early December 2005. I didn’t get this information until much later, I have no idea if this information was passed to my Respiratory consultant or got lost in transit. I was now seeing a new Consultant, he was a locum and took the place of the previous Consultant who had retired. He was very dismissive of any questions I asked and I asked a LOT of questions! I had explained what had happened to me and how it affected my lungs but he just kept telling me nothing was wrong, ’I just had asthma’! I told him that my asthma was under control and this wasn’t asthma but he wouldn’t listen. I also explained I couldn’t feel the air going into my right bottom lung, and requested seeing a physiotherapist to learn some techniques to move the vast quantities of sputum I now produced. He did agree but unhappily. The physio agreed I did have blocked air entry and lots of crackles. She took the time to teach me Postural drainage techniques to help me clear my lungs and taught my daughter cupping techniques to help. When I next saw him in late December 2005 he refused to take her results from me until I insisted it went into my files. At my next appointment in June 2006 he said ‘If you want to waste more of my time and insist you’re ill I will give you these last 2 tests and do no more for you!!’ (a by now familiar phrase). One was a CT scan with ‘to disprove Bronchiectasis’ written across the top and the other was a blood test for Aspergillus. Within 6 weeks I had my diagnosis of both conditions, Allergic BronchoPulmonary Aspergillosis, (ABPA) and Bronchiectasis. With a prescription for an anti-fungal medication, Itraconazole, I felt at last I was on my way to getting better.
My journey didn’t quite stop there as I was still just as poorly and the Itraconazole didn’t seem to work. I hadn’t used a computer much before but I researched support groups for both diseases. I found a really good online support group for Bronchiectasis and the Aspergillus Support group online too. On the Aspergillus website was a Patient/Dr Question and Answer board for patients as well as support and research articles. I put my questions as to why I wasn’t feeling better yet? Professor Denning answered (although I had no idea that’s who he was) and after that, I was saved. He invited me to get my GP to refer me to his clinic in Manchester and by October 2006 I was there for my first appointment. The Itraconazole was changed to liquid form as I wasn’t absorbing enough of it and it started to work but best of all my sputum was tested for any living thing and there was a fair few, including Stenotrophamonas Maltiphilia, Staphylococcus Aureus and Pseudomonas. Along with getting treatment for my Aspergillus and also for all these hospital acquired infections I started to recover some of my previous lung health. I could breathe again. Then at the end of January 2007 my sputum sample grew Mycobacterium Xenopii. An Atypical T.B. To treat it and the Aspergillus I was put on 3 different antibiotics that would carefully balance with Itraconazole. This treatment can last for 2 years and was pretty gruelling. At my next appointment in April I was told that my Aspergillus had shown resistance to Itraconazole and was prescribed Voriconazole. By the end of 2007 I was struggling still with not only Mycobacterium Xenopii but also E.Coli, all the antibiotics made me feel so ill I was prescribed nebulised antibiotic to fight E.Coli.
Going into 2008 my health seemed stable so in April it was decided I could come off the Mycobacterium drugs regime after 14 months. By June I was in my local Hospital Respiratory ward. A CT scan showed that I had a round patch of pneumonia now growing in my right lung I was admitted for 4 days IV treatment and oral antibiotics after. I was due at clinic in Manchester so got discharged to go to that clinic. Professor Denning did not agree with the diagnosis and said it was a cavity and so another 2 weeks in hospital on IV medicines up in Manchester. I was discharged with Nebulised Amikacin for a month and back on treatment for Mycobacterium Xenopii. I was also diagnosed with an azole resistant strain of Aspergillus Fumigatus and changed from Voriconazole to Posaconazole, which showed some sensitivity. In October I had an infection in my leg, Cellulitis. We had gone to stay with family and I remember waking my husband in the night with the pain in my leg but I have no memory just a few letters from Hospital. I was admitted to a local hospital and more IV’s followed. I then went back to Manchester for a clinic and was so unwell still that they admitted me to the wards. It was my Birthday and I remember I couldn’t eat the cake my family bought for me it was my favourite Toffee Lumpy Bumpy Cake! I had been for a bronchoscopy I have no memory of it just a vague recollection I was coughing lots of fluid continuously. After that I am told that I just continued worsening, going into Respiratory arrest. Professor Denning had been called by then and waited with my family until they got a bed for me in Intensive care and put me into an induced coma to try to save my life. While in the coma my Kidneys failed and I was put on dialysis, my family were called. It was a terrible time for them all. It took a long while to recover, not least as my legs were numb from the knees down and I was weak as a kitten, but it all cleared up over time and I’ve just been left with Peripheral Neuropathy in my feet and a deterioration in my short-term memory. I feel lucky to be alive!
Since then I have dealt with my IgE levels going Up and being treated with steroids and then going back down, then up again, not really stable for long. I also still have frequent chest infections, more recently E.Coli for 2 years. It became resistant to all antibiotics until I was prescribed Nebulised Tobramycin which worked. During 2017 I realised my sinus was starting to block up I spoke to Professor Denning who said best to see an ENT consultant. I did and went for a CT scan which showed many blockages in my left sinus and some in my right. He sent me away with Sinus Spray. Last year I started blowing out large amounts of infected mucus, I took photo’s and assumed they were fungal. I showed them to Professor Denning who advised I went back to E.N.T as I probably needed surgery. One day in June I started sneezing and about an hour later after much blowing and sniffing a round ball of brown seeds popped out!! I took a photo and put it in a postal pack for Manchester Laboratories and wrote a note saying this came out of my sinus, please test. Normally we send sputum samples between appointments if necessary. When I got to clinic a few weeks later I found it was Aspergillus Fumigatus and sensitive to, Isavuconazole a new Antifungal medicine, to help fight the fungal infection. Sadly, although It helped and I was getting rid of a lot of fungal infection from my sinus it also affected my Liver and I had to stop taking it. There were no more antifungals. Professor Denning told my husband we had reached the end of the road as far as antifungals go. I felt terrified and contacted Professor Denning and he agreed I could carry on with Amphotericin B as I still had loads at home. At the end of last year, I started coughing nasty infected mucous up and sent a sample by Post. At my next appointment I was given the news I now am growing a new fungal infection, Aspergillus Niger, in my lungs and it is sensitive to all antifungals.
I now continue to nebulise Amphotericin B as it will definitely help contain the Niger infection and ‘may’ do some good with Aspergillus Fumigatus. I have hope that more Antifungal drugs will soon be ready for patients like me, complicated with azole-resistant strains of Aspergillus Fumigatus with Bronchiectasis adding bacterial infections the mix.
